Newcastle’s Labour MP Paul Farrelly today joined Tia Copsey, her father Tim and other parents and children outside Parliament to lobby the government to fund a drug that is proven to help people suffering from the rare genetic disorder, Morquio Syndrome.

Tia, aged 10 and from Newcastle, is one of 88 people in the country suffering from the disease, which severely restricts growth and causes multiple other medical problems.

For the last six years, the Hassell Primary School pupil has taken part in clinical trials for the drug, known commercially as Vimizim, which has radically enhanced her quality of life and given her a greater ability to cope with the symptoms.

Vimizin was first licensed in April, 2014 and is now approved for use in over 20 European countries. In the UK, though, a go-ahead for NHS prescription has been stuck in a lengthy consultation process over funding, with a decision originally expected in April of this year.

A fortnight ago, however, NHS England decided to further extend the process by referring a final decision to the medicines watchdog NICE – the National Institute for Health and Care Excellence, which evaluates treatments for their cost-effectiveness.

The delay – with NICE only expected to pronounce now in October - has left Tia, her parents and other sufferers in a continuing limbo of uncertainty.

Three weeks ago, too, the drug’s manufacturer BioMarin, which had been providing the treatment for free on compassionate grounds, stopped supplies in the UK in exasperation at NHS England’s lack of engagement with the company.

The treatment’s suspension has already meant that Tia suffers increased pain and tiredness, and her health will deteriorate further as she waits for the decision.

‘The Government really has a moral duty to help Tia and sufferers from Morquio Syndrome and other ultra-rare genetic diseases by prescribing this life-changing drug,’ Mr Farrelly said.

‘Since its creation during the Government’s controversial health reforms, in my experience NHS England has been the most unaccountable body in the public sector, yet it wields immense power, including taking life or death decisions.’

‘In this case, however, it has just passed the buck, meaning more suffering, so it is time that David Cameron and his Health Secretary Jeremy Hunt stepped in and decided,’ he added.

A letter from Mr Farrelly in February to the Prime Minister, co-signed by 14 other MPs, has still not gained a reply. Following the House of Commons protest, Newcastle’s MP went with Tia and her dad to 10 Downing Street to deliver a second letter - from Tia herself.

Treatment with Vimizim costs over £100,000 a year, but it has been proved to work in tackling the disease.